Tracking Lupus Symptoms
Keeping track of your lupus treatment and flares is a great way to monitor your disease activity and help figure out what is working for you and what isn’t. Lupus doesn’t have a one size fits all treatment; therefore it is extremely important to be vigilant about recording what is helping you feel healthier and stronger.
Keeping track of your disease activity can also aid your doctors in determining what course of treatment works best for you.
Keep a Diary of Your Symptoms
Keeping a lupus journal is incredibly important, especially for those of you who are newly diagnosed or questioning whether or not you have lupus.
Keeping track of your symptoms on a daily basis can help you discover patterns in your symptoms and concretely tell you how often you are experiencing them. For women, this may be particularly helpful as patterns may occur during a menstrual cycle.
This doesn’t mean that your symptoms are chalked up to your period, but it may mean your hormones fluctuate in a way that means your symptoms are more noticeable at different points in your cycle.
Make sure you have a copy for yourself for your own records, but don’t hesitate to give one to your doctor or rheumatologist. When you see your doctor, it is only for a small chunk of time and how you feel when you see him or her often doesn’t represent the way you feel on a daily basis.
Additionally, due to wait times to see a specialist, you may not even feel sick by the time your appointment comes up. With a diary, you can present a better picture for treatment or diagnosis.
Track Your Periods
If you are a woman and still menstruating, keep track of your periods to compare with the diary of your symptoms. This can help you figure out if some symptoms are related to hormones and whether or not your cycle is regular.
For me, menstruation often is correlated with excess fatigue and soreness, so it is particularly important to pinpoint any patterns with your illness. You may be able to take something to regulate your hormones or to combat your symptoms during specific points in your cycle.
Record Your Treatments
Recording your treatments is particularly important when starting a dose of something new. As I mentioned before, there is no one size fits all treatment for lupus, thus a lot of treatments are essentially trial and error (based, of course, on the doctor’s educated guess).
Therefore, keeping a diary of when you’re taking the medication, how much, and what your symptoms were for the day can help you and your doctor see if what you’ve been given is, indeed, working.
Changes may be subtle and you may end up needing just a little bit more or less of the medication in order to help you feel better. Together with your doctor you can attempt to crack the code to your individual lupus.
You Are What You Eat
While I do not agree with the mumbo jumbo people spew every now and then concerning particular foods curing lupus, it is a well-known fact that certain foods can trigger lupus symptoms.
Foods that lupus sufferers should classically avoid are the nightshade vegetables (tomatoes, peppers, eggplant and potatoes) and alfalfa sprouts. The St. Thomas Trust in London, one of the biggest lupus research centers in the world, suggests that lupus patients eat more oily fish such as salmon, sardines and mackerel.
Otherwise, they emphasize a healthy diet as a way to keep lupus symptoms in check.
While eating certain foods, or avoiding them, is not going to cure your lupus (despite what your postman’s sister’s hairdresser says), it is useful to know if particular foods make you feel better or worse. Personally, I find that an increased amount of protein gives me more energy, and that when I go days without it, I often feel as though I’m lagging behind.
Likewise, excess sugar, soda and fatty foods can also make you feel incredibly sluggish. But there may be foods that you find make you feel worse than others, either by increasing your lupus symptoms or upsetting your GI tract, therefore kicking your lupus symptoms into overdrive.
To keep healthy, it is important to maintain a balanced diet — something I am very guilty of not always following through on!
In order to ensure this, start keeping track of your food intake with apps such as MyFitnessPal or MyCalorieCounter. Not only do they keep an extensive repository of foods with caloric information, they also tell you how much you should be eating of essential food elements such as fat, protein, sodium, carbs and sugar.
If you’re not keeping track, you may surprised to learn how far off base you are. These tools can keep your diet balanced, but also help you to be aware of overindulging.
When many people have flares, they are prescribed steroids, which increase the appetite. Likewise, many people find they don’t lose their appetite with a flare and may overindulge unknowingly as they are suddenly not getting any exercise. These trackers will help you keep your waistline in check while also keeping track of the essential nutrients you need.
If you are having issues with your GI tract in relation to lupus, keeping track of symptoms after eating certain foods is very helpful. This can help you and your doctor determine if you are allergic to a specific food or food group and eliminating it from your diet may improve both your health and your lupus.
Keeping Up with Your Fitness
Running a 5K race isn’t going to be on the cards for many lupus patients, but that doesn’t mean fitness isn’t important in staving off flare-ups. While it is important to rest when you’re having a flare or recovering from an illness or injury, it is equally as important to get in some exercise when you’re feeling healthy and strong.
Working out with lupus actually keeps my body stronger and more resistant to flares as well as stabilizes the muscles around my joints to reduce joint pain during a flare.
You can set small goals for yourself fitness-wise and track them via the tools mentioned above. This can be something as small as walking for five to ten minutes a day, to doing a full on workout routine at the gym.
Exercise that is particularly good for lupus includes swimming (all the joints are supported as you’re getting a cardio and resistant work out), biking (although repetitive, it is easy on the knees and ankles) and the cross trainer/elliptical (also very easy on the knees and ankles).
To keep yourself healthy, make it one of your goals to keep track of your lupus. Your body will thank you later.